Sick, Snow, Sounds, Spring

Oh, and two new favorite songs. At the bottom ——>>>>

This morning I was lucky to wake up to one of my favorite scenes: a thin blanket of white glistening atop every surface as far as I could see. Smoky, colorless pearls of clouds covered the sky, simulating life within a snow globe. No one had shaken it yet. A pristine world shimmered untouched, au naturale. The flakes were still falling, and as the morning went on they would oscillate from quarter-sized to barely visible. I love snow so much. And miss it! We barely received any this year, so this felt like a nice treat, despite it hardly reaching an inch. It’d be gone by late afternoon, but still it carried with it the sentiment of an anonymous gift.

I drank my coffee and watched as River hippity hopped around on this fluffy new texture, wholly excited simply by the feeling of something new under her feet. I imagine most dogs are this way, and the ones who aren’t are usually cats. Most people around here would say “It’s about time!” as it’s been an incredibly dry and mild winter Our first *real* snow arriving February 20th!? Everything in due time, I suppose. Else we are slowly succumbing to the unnatural phenomenon of everything warming until none of this is habitable anymore. By that time maybe, Mars will step in. If not, we self destruct, which Tolle describes as “not really a problem at all.” We’re all going to go, one way or another.

I am weaker than I’d like to be—which is not weak at all, of course. Even though I had inched my way to improvement over the last week, for some reason I woke up on Tuesday to the physical news that my muscles had turned to lead over night. Life is full of such creative surprises! My upper body and arms in particular strain to do very basic things, like brush my teeth—and that’s a great way to feel even more pathetic than you look. But I know the drill: no matter how many tasks remain written, undone, on the list that I’d like to start and even, gasp, finish in the near future, will all just have to wait. And I’ll just have to wait until my strength returns, which seems to happen inevitably in time, for no good reason at all— Just the same as how it arrived.

The kind part of laundry, dishes, the spice cabinet I’ve really been wanting to organize, is that they’re all very patient, so lucky me! In reality, when I can’t do these tasks it means someone else will have to, and I can’t tell you how bothersome that is. Not bothersome, but something more adjacent to guilt. I want to be a clean and organized and helpful person, and nothing disrupts that possibility more than a body reliable purely for its unreliability. Infuriating! But those are the rules dear. You can rest, waiting, either angry or surrendered; *that* choice is always mine.

The only real way to *wait* for some level of wellness to return with any sanity is to embrace to the present. Continually try to re-renter and stay in the now, reminding myself everything is actually fine. I *wish* it were different, yes. But it’s not life and death here. It’s mostly tolerance, humility, and patience. I have to remember (again and again on days like this) that all things of priority are operating, and all secondary things will be tended to when I’m able. The pile of laundry waiting to be folded has turned into a sculpture like heap in the hallway. Interesting color combinations and whatnot. More life surprises!

This thing called surrender comes highly into play throughout times like this, but it must always be discerned and separated from the idea of giving up. Yes, the two are mutually exclusive,as one implies befriending the present moment and accepting what’s possible and not; reality as is. The other has to do more solely with will power and throwing in the towel. As anyone and everyone with ME/CFS knows, if you could will-power your way out of this thing, we’d all be healthy as an ox. As Oxen? Who decided Oxen were the emblem of health anyway? Wait, who cares.

Despite the inch of snow disappearing by evening, remnants will remain. In the shady areas small patches it will last for a week. And in the yards where children play, sad looking snowmen will slowly shrink and deform until just two twigs-once-appendages lie in the wreckage pile. Perhaps with a rotting carrot somewhere in the mix. But for now it can simply be appreciated and enjoyed. One of my true great pleasures in life is experiencing the silence of snow, falling or freshly fallen. If you’ve ever stood in freshly fallen snow, or caught it still coming down, you know exactly the tenure of silence it conveys. It’s a sacredness proximal to watching the sun rise or set, or looking out into the oceans without a spec of land in site, or into the depths of canyons thousands of feet deep.

It offers to me the feeling of how much bigger than me the world is- how the earth inhabits a living autonomy, apart from the humans who occupy it. And yet, I have to believe we’re connected on some unseeable, unknowable field. I feel small in a good way—protected, overseen. A feeling of trust emerges because nature and all its phenomena far surpass me and my little life. It knows exactly what it’s doing. Which is reassuring personally, because I certainly do not.

(Here are some polaroids I took across the day. Polaroids: Because there’s just not enough damn photos out there.

Snow gives good reason to pause and reflect. Not to mention it makes for nice scenery when you’re sick and essentially useless. I would surmise too few of us really stop and take it all in as much as we ought to. Easy to get lost in the frustration of scraping down your car windshield or having to shovel the driveway. For me it’s the audible nature of it, both the particular sounds it makes and the muteness it creates. If you close your eyes, nearly everyone can hear the crackle and crunch of footsteps in the snow. But you can also hear the insulated silence, the voices and sounds muffled by the accumulation. As it turns out, there’s a scientific reason why snow leaves such a pervasive, distinct quiet: Each snowflake acts as its own tiny sponge, as does the amassed snow on the ground. In this capacity, the snow is actually absorbing sound, leaving a sanctified hush in the place of the typical, unbuffered world and its noise. Is nature neat or what?! I DO declare.

(Two Weeks Later)

The snow is long gone, the birds are chirping, and it’s in the upper 60’s. February is over! I was starting to doubt that might never happen and I may personally enter a ground Hogs Day situation. Anyway, this weather is a tease. We’ll get hit with a few more cold snaps before the warmth really settles in. Guess what? I’m still weak. ME/CFS is a resilient disease. Rain/snow/or shine: It can and will thrive through anything! Oh well, I had a fun and more energetic weekend, which is probably why I’m paying a physical price now. So it’s back to to-do lists undone, River ansy for her walk, and all the sounds of nature crystallized and clear, animating another day of rest.

I have learned to do this, and work constantly not to forget. I’ve gotten pretty good at doing very, very little. Can you imagine that being anything to be proud of? Ridiculous. And normally, no. But for the hand millions of people and I have been dealt, it’s a teeny, tiny victory. With patience, all of what we must do, all of nature, and all we wish to achieve will unfold as time and space allow. In the meantime, we have to continue to find and adapt to who we are, no matter what transpires on the outside of us all.

Health, Happiness, Unfolding

P.S. Listen to these two songs: They’re my faves right now.

The Belly of the Beast: Chronicle of a Crash

My aunt is dancing in circles around me. She’s cleaning and organizing any and everything around the house. She just brought oatmeal and medicine to me in bed for the ulcer that’s upset again. Now she’s painting the dark spots on the baseboard in the bathroom, and she’s humming while she does it. She’s like a little home-improvement fairy. Last week, it was my oldest brother Doug in similar shoes. 

He talks and makes jokes while cleaning the kitchen— wiping down the counter the way a good bartender would. He makes coffee, cooks breakfast, fixes the broken technology around here, then asks what’s for lunch an hour after breakfast. My mom and I groan. Neither of us think much about food, nor about life past the next five minutes. He volunteers to run out for groceries and pick up prescriptions. When he returns, he’s still armed with energy to cook the food he just expended himself on buying. Incredible. 

Each of them work so fast and seamlessly between small jobs. I just watch and listen to them in total awe. I am pathetically stagnant, in one of the worst crashes I can remember. I feel like the still, unmoving eye of a hurricane, and people like Doug and Amy are the winds and rain and sheer forces of life blowing up all around me. 

Meanwhile, I’m reeeeally helpful…

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Hi would like yall like help doing the dishes? Just kidding I can’t stand hehe.

Their ability to complete tasks, one after the other, without having to stop in-between astounds me. Simple things requiring any iota of strength—running down the stairs for instance, which my brother does without a second thought—appear miraculous. I might as well be watching Doug walk on water.

Those stairs. They nearly haunt me. I crawl up them in the morning on all fours. I have to catch my breath at the top. I have to catch my breath all the time. 

I’ve never had shortness of breath this severe or last this long. We can’t figure it out. My o2 level is typically fine, though it drops in the 80’s when I’m upright. I cannot sustain a normal blood pressure. Every time we take it it’s somewhere around 80/50. My mom unwraps the velcro cuff and says Well, that would explain you feeling half dead. 

So often these last few months, I hardly feel like a person. I’m more like a spirit dragging around a clunky, metal, ginormous body that doesn’t work. It won’t go. It’s broke. But my mind is alive and wild as ever. I’m living mostly within the confines of that mind. The body cannot carry out what the soul craves, so nearly everything experiential is internal.

Anything requiring an outer effort is reduced to absolute necessity. Bathroom and back. Feed dog and lay down. Fill water glass, lean against the sink waiting, trudge back to bed. There is no room for recreation.

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Monty Gets It

I spend 95% of my time supine. Never stand when I can sit. Never sit when I can lay. That’s basically always the crash mantra, but it’s so especially true now. I find myself craving soft surfaces and soft clothes. I have no idea why I love looking at dresses and runway shows online. I can’t imagine wearing them–No, I can only imagine wearing them. But I actually never would. Fantasy I guess. Still gives a dopamine kick.

I hear my aunts phone ring and she answers it, while working! My brother does this too—which is again, unbelievable. How can they talk and listen and continue their task? I forget about socializing because I’m so busy trying to, you know, breathe. I forget that we need it; we’re humans and we crave connection. I need it too, and yet the sound of my phone ringing almost makes me angry. Why? Who would call me? I’m a moron!

Mostly I’m just irritable; exhausted from continuously wearing out so easily. I have nothing left to give on the phone. I am a pretty clutch texter, though. I feel a lot like this kitten I saw on Instagram…>>>>1

Only the people who I love and love me would call. (Pharmacies too, and a few scammers, too.) But talking takes energy. Even laughing takes it. Sometimes I take the plunge and pay the price. It’s worth it. For the sake of my soul it’s worth it. But right now, if my phone rings, I silence it and roll over.

This is how and why chronically sick life becomes so isolating. Relationships take maintenance. It’s why I’m so often a bad friend, sibling, aunt etc. etc. in terms of ‘staying in touch.’ And yet…

I’m lucky. I have understanding friends. An extremely supportive family. Most have learned my limits, or at least witnessed them and know what to expect. Even if they don’t understand it, the closest ones accept it and stick with me. I’m lucky as anything for all of them. 

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How Doth Thou Resist?

I keep promising Monty a walk, but we never go. Just to the backyard where I clumsily throw a tennis ball and he’s as excited and focused as the first time he learned he could drop a ball in front of me, whereupon I would throw it, and repeat this action to infinity. His cheerful, eagerness for every day of his life brings me incredible joy.

He eases my burden so often, in a way only dogs can. Just watching his tail wag and touching his velvet ears lightens me. Softens things. He follows me everywhere, even the bathroom, which I read is an instinctual protective measure, and now it kind of makes my heart melt.

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Hi I’ll Just Be Here While You Pee

 

I notice the healthy people never calculate cost. Physical cost. It never seems to be whether they have the energy to do something, only if they have the time. We all pay with different currencies. I cannot remember it. I cannot remember what that ‘energy-on-tap’ feels like anymore. I only know I had it once. 

I dream all the time about the day it comes back. I still believe I will have a life one day where a lack of health won’t be so consuming, so dominant. For now I feel like I’m standing in the same spot in the sand, the ocean of sickness coming in and out with the tide. The water crashes over me in waves again and again. Sometimes it relents, I will feel OK, (an extremely relative term) attend a family gathering. I appear ‘well enough’—healthy enough. Other times the waves wash over me and I nearly drown in them. I can barely see.  

I’m in that place now. I broke my own record for how long I could go without a shower/bath. The answer is way too long, mkay?! But this crash has been so powerful. So persistent. A shower just feels like a joke of an idea. My aunt keeps offering to wash my hair in the sink, but even that idea exhausts me, and I’d still feel dirty anyway. Poor Amy, I must really look rough. 

Sometimes it all becomes too heavy. Last week I lost it and the tears came out streaming hard and fast. I could barely speak—-couldn’t convey what was wrong. But because my mom is who she is, I didn’t have to. She patted my disgusting, unclean hair, not minding what an insane mess I was. “It’s OK Mary, just let yourself cry.” Her voice was shaky too and I thought how hard this must be to have to watch her kid like this and I hate that aspect so much. Love like hers is strong and remarkable and brings me back on solid ground. 

It’s easy to forget she has this disease too. And so does my sister. Watching her children suffer is worse than anything, including her own physical suffering, she says. I believe her. I also believe I’ll be well again. I’ll at least be better than the human disaster I am now. One day, the roles will finally reverse. I’ll be healthy and able to care for her. Take her blood pressure. I joke that as reimbursement for their long-term care, I’ll change her and Marcs diapers when they’re absurdly old. It makes all of us laugh, but I really do mean it. 

Even in a crash as devastating as this one, I have to believe I will come out of it, despite not remembering what I felt like before. Once I’m better, I won’t remember how bad this feels. It’s such a strange phenomenon. I can’t wait to not remember.

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Note to self, this blows really hard.

Things will change, they always do. This will pass and things will improve. I don’t know how it will happen, though a few ideas float to the top each time. Must keep writing. Must keep trying. Must keep believing. 

For now, the challenge remains the same: finding the balance between surrendering to what my body needs, while pushing back on the things that I can change. That need changing. I won’t give up on pursuing health and trying to accept that my definition of ‘well’ will be different from others. I’ll contunue to try and recognize joy, meaning, and gratitude among the muck. Cry when I need to cry, but try to laugh more.

I’ll continue to pursue a version of myself that I can be proud of, even when I’m swallowed whole by this miserable beast. That part is the hardest, but most worthwhile. 

I won’t give up on fighting for the NIH to see us. 

My eyes are heavy again and my head is clouding up. Time to drift away to some tinkered version of here. I can hear my aunt in the kitchen, sweeping, chatting. My brother shuffling up and down both flights of stairs. My moms hand stroking my hair. Thank God for help. It will be OK. Keep trying. Keep going.

Health, Happiness, The Belly

 ***PSA!!!***

I am happy to report that after three extremely hard, very sick months, I have finally emerged out of the rock-bottom part of this crash. I can breathe again! I’m on two feet, thanks to prescription, altitude, and stress adjustments. I was finally cognitively capable of pulling some writing from the last few months together. Anyway, if you’re going through hell right now, in whatever capacity, I feel you. Keep going. It gets better.

Day One

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